How losing my husband to dementia inspired my research career

In 2008 at the age of 58 I made a big change in my life. My daughter and son had left home to go to university and I moved from Oxford to Manchester to pursue a new career as a dementia researcher.

I completed a PhD in 2015 and now specialise in using MRI (magnetic resonance imaging) to investigate brain changes in people with dementia with the aim of improving diagnosis. I’d previously worked as a computer programmer, but I decided I wanted to use my brain to help make breakthroughs possible in the search for life-changing treatments for people with dementia.

What brings me to the university every day is a determination to ensure other families don’t have to go through the years of anguish I went through with my husband Clive. He was diagnosed with frontotemporal dementia aged just 46 and died aged 51.

Hindsight is a wonderful thing. When I look back now I wonder why it took so long to realise that my husband was ill. The strange behaviour, the lapses in memory, the inability to fill out simple forms, were all things that changed so slowly that I acclimatised myself to them all.

It was only after a few years that I understood how truly disabled he was, and then I had to persuade the doctors he was unwell. For a long time, they refused to admit that a healthy man in his early 40s could have dementia. When we finally got a diagnosis, there was no treatment and very little support.

Clive was 40 when he first approached his GP with ‘problems with reading and writing’. He was reassured it was normal. With hindsight, one questions that decision. Reading and writing are such specific skills, and not normally lost in middle age. However, Clive accepted it, and got on with his life.

We had just had the first of our two children, so there was a lot of change. Three years later he was made redundant after a big row at work regarding changes in his behaviour and ability (‘refused to accept direction’, ‘inability to write reports’) and failed to find another job of any sort. He couldn’t even remember how to turn the computer on to write a letter. And still he refused to admit he was having difficulty, and I, busy with childcare and my own job, just accepted it.

Eventually, five years after he first talked to his GP, we got a diagnosis of ‘pre-senile dementia’ (a term not used now), later modified to behavioural variant frontotemporal dementia (bvFTD).

We managed to get by as a family for another year or so, but as his symptoms progressed he had to go into full-time care. He died in 1999.

After my experience with Clive, I found that he was not alone – there are several thousand people in the UK who develop young-onset dementia. The majority have difficulty getting a diagnosis, and a gap of several years between first noticeable symptoms and diagnosis is common.

Clive was diagnosed in the early 1990s, and nowadays things are little different. We still don’t have a test for frontotemporal dementia. We still don’t have a treatment that will stop or slow the progress of any of the various forms of dementia. Although maybe GPs are more aware that dementia occasionally hits people under 65.

So, why does getting a timely diagnosis matter? If cognitive difficulties are mistakenly put down to ‘a mid-life crisis’, or alcohol abuse, or any of the other excuses people come up with, there is no support, no sick pay, no benefits. People resign, get divorced, are made redundant or sacked. It would be very different if they had a heart attack, or a stroke, but those things are immediately recognisable.

We also know that changes in the brain start several years before dementia symptoms develop. For new treatments to be effective we need to be giving them to people before the destruction of brain cells caused by Alzheimer’s and other forms of dementia is noticeable.

I’ve only been a dementia researcher for nine years, but in that time the field has changed greatly.

We’ve seen significant breakthroughs in our understanding of dementia. Just as importantly there’s also a lot more public awareness. It is no longer an illness to be hidden, but something that more people are prepared to talk about. And that has to be a good thing. How can you study an illness if you refuse to admit it exists?

People are becoming much more aware that Alzheimer’s and the other forms of dementia are physical diseases and not an inevitable part of growing old.

The biggest and most promising change for me is that the sense of hopelessness that has existed around dementia for so long is fading. Go to a dementia conference nowadays and there is a real optimism among scientists that the first life-changing treatment for dementia is on the way.

So, join me in my mission to make breakthroughs happen – start that conversation, arm yourself with knowledge and get behind Alzheimer’s Research UK’s mission to bring about life-changing dementia treatments.